Family take big steps for Lauren

Lauren Benney with siblings Matt and Emma - featured on ITV This Morning in 2007

Published:07:31Saturday 22 September 2012

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A Chorley family are trying to raise money to research a cure for a condition which affected their daughter.

Lauren Benney, who shot to fame when her story was on popular television programme This Morning four years ago as she had Pyruvate dehydrogenase complex (PDH) which affected her since birth.

It is one of the most common neurodegenerative disorders associated with abnormal mitochondrial metabolism.

It means that the sufferer cannot process carbohydrates to make energy.

However the nine-year-old beat all the odds as doctors claimed that she would only live until she was four.

Tragedy struck earlier this year in March when she lost her battle with the condition.

Now, the family have made it their mission to try to provide more information and research for other people who have PDH.

Mum Louise said: “My husband, some family, friends and myself have committed to raising $10k for the UMDF to research the condition Lauren had.

“We are kickstarting this on October 6 with a 36 mile walk from Royal Preston hospital where she was a semi frequent visitor to Alder Hey, a trip she made a few times to ICU.

“Through social media we are in touch with the approximately 30 other families around the world who also have a child with the condition and later this year we are going to meet them in Florida and speak to the man who will hopefully agree to carry out the research.

“Little is known about PDH deficiency, there is no cure and sadly the prognosis for sufferers isn’t good.

“There is a wealth of info from families in our group and it would benefit the medical profession and families if this was documented more formerly - I am hopeful the money may pay for this.”

The family have been stunned by former friends wanting to pull on their boots to go walking on the trek.

Louise added “We have been amazed by the support of everyone.

“At first it just started off with me and my husband wanting to do it.

“But other people wanted to get involved so it means we have had to plan our route carefully with kids and everyone coming.”

If you want to donate money to the fund then you can check out the site: http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8123399/k.3430/The_Lauren_Benney_Research_Fund.htm